Hello! New to Forum but not WG....we're long time "friends."

[Frodo]

1899Hello everyone. Very glad to have found this forum.

A quick bio from me:
I'm a 54 year old man. I developed Crohn's disease at 21 and have had 2 bowel resections since then. One in 1984 and one in 1996. My Crohn's has been in remission for about 10 years :smile:

WG symptoms started about 25 years ago, with nose bleeds, sinus pain.

My diagnosis is "Limited Wegener's" because it has apparently only affected my nose area. I have severe "saddle nose", which would now be more accurately described as "no nose", because there's very little, if any, cartilage left and the destruction has made it such that I cannot breathe through my nose at all 90% of the time. Both my eyes tear constantly because my tear duct(s) have been blocked. I have hearing loss in my right ear due to the glue-like fluid in my ear.

I was taking Imuran up 'till a couple of years ago, but now I only take 10 mg of Prednisone daily. I've been taking this dose for 20+ years now, and started it to deal with my Crohn's.

Most of my bad WG symptoms, which was sinus pain, & nose bleeds, have eased considerably over the past few years, probably because there's not much left of my nose. I can rarely smell anything at all. I have scabs on my nose that just won't properly heal, I guess because of the limited blood flow to the area. This just makes my not-so-pretty nose even less pretty.

That said, I'm a pretty happy soul the last few years, because after 30+ years of pain from Crohn's and/or Wegener's, to be mostly pain free is awesome. I have a great wife, 2 great kids, and 2 years ago, I completed a 130 km, very mountainous bike ride. My "improved" health has giving me an opportunity to try to make up for lost time in a lot of ways.

Thanks for reading. I'm going to start reading other posts now so I can get a feel for what others have / are going through.

Cheers!

[pberggren1]

Welcome to the Shire. What year were you diagnosed?

[Frodo]

Thank you!

Diagnosed approximately, 1998 but it took a few years of symptoms before that.


Welcome to the Shire. What year were you diagnosed?

[pberggren1]

Wow, so you have probably had it for 30 years or more.

[Frodo]

I would say about 25 years because I had what turned out to be clear symptoms for about 10 years before diagnosis. Had radiation therapy on my nose / sinsuses back in early '90's and too many guess diagnoses to count before Wegner's was identified as the culprit.

[Alysia]

Hi Frodo and wellcome.

your story is sad and scary to me. I wonder if this is what waiting to me in more 20 years... what meds did you got all those years ? can you help us with your experience, what can we do to "stay with a nose" ?

Lord of the Rings is one of my favorite books/moovies. my favorite is Eowyn, and this is why:

Eowyn meets the Witch King of Angmar - YouTube (http://www.youtube.com/watch?feature=player_detailpage&v=dQ_-rmuPZC4)

I understand why you put the picture of Gollum but calls yourself Frodo... the difference between the inside and the outside....

[Frodo]

Thank you Alysia,

First of all, as I'm sure you know, Wegener's manifests itself very differently from patient to patient so please don't get discouraged by my experience because it no way means that you or anyone else with involvement of the nose will have their condition progress as mine did.

That said, I understand your interest in my story. As with many things WG related, there are many things that may or may not have contributed to my current state. The least of which was that I had quite severe symptoms for about 10 years, before receiving any meds or treatment, other than Prednisone, which I was already taking for Crohn's disease. Docs thought I had cancer of some kind in early '90's and received 2 weeks of daily radiation therapy at cancer clinic.

I took Imuran for about 5 years starting about 10 years ago, but went off it about 5 years ago and have only been on Prednisone since. There are many new meds available today that weren't available 10 or 20 years ago.

As for the Lord of the Rings...well I'm kinda obsessed with the movies / books. My favourite character hands down is Gollum. I believe there is some Gollum in all of us.
The scene you posted was awesome for sure and similar to this one. LOTR - Deleted Scenes - Mouth Of Sauron - YouTube (http://www.youtube.com/watch?v=8FfRRpRAHI0) which I also loved.


My prized possession; 1898

Take care.

[Alysia]

Hi Frodo.
thanks for the encouragement. I allways wanted smaller nose, now Im relieved that I have "spare" :wink1:

as for "Lord of the rings", great masterpiece, thanks for the scene. Aragorn is admireable.
I agree that we all have some Gollum inside us ,touching when it beccomes Smeagol... "precious" if we have awareness to it...

[annekat]

Welcome, Frodo. I also have saddle nose but not a severe one like yours. It does not seem to be changing and I'm pretty much counting on it not to. I also have hearing loss and no sense of smell. Eyes were quite watery but that has improved a lot. Had lung involvement, too, but not as severe as some on here, and cleared up nicely with CTX. Now on MTX and pred and Bactrim. It's only been 2 years since dx for me but I had it for a couple of years before that, I'm sure.

Glad to hear your story and sorry about your nose. You might check out Barbara who has had severe loss of facial features. Most of us are lucky enough not to have endured that. Thank goodness for your great family and your ability to keep doing the things you love.... Barbara is similar in that way.

I look forward to hearing more of your thoughts and experiences.

[mishb]

Hi Frodo and a welcome to you, from Australia.

You have certainly been through a lot and I look forward to hearing from you about your experiences with WG for all of these years.

As for Lord of the Rings .......sorry, I don't get them. We had to read the Hobbit many many years ago at school and it just wasn't my thing back then. Maybe I should try reading them again, one day.

[Mikek]

Michelle!!!!! Dont like The Hobbit and you dont support Collinwood. Im sad for you. hahaha. Sounds to me as if Frodo has developed a great attitude towards WG.

[mishb]

Michelle!!!!! Dont like The Hobbit and you dont support Collinwood. Im sad for you. hahaha. Sounds to me as if Frodo has developed a great attitude towards WG.

Okay Mike, your team were the better players today........dig accepted :flapper:

He certainly has been through a lot. I hope Jenny is feeling a little better this weekend. When is her next MTX, Monday or Tuesday?
I take mine on Mondays - rheumy says to remember "M" for Monday and Mtx.

[annekat]

Michelle, you might try the Tolkien books again. I have a hard time imagining watching the movies and really getting them without reading the books first but some people do. Not everyone can get into fantasy reading. It is pure escapism. I haven't read them for about 40 years, I guess. Sangye told me she can't get into the books and prefers to read other kinds of things, but likes the movies, enjoys the special effects. I can see that, but would have trouble keeping track of the characters and events without the background of the books.

[Mikek]

Jen takes hers on Tuesdays. I've been a bit concerned this weekend, she's so weak she can only just get to the car. We went shopping today and she had to support herself on the trolly. Her appetite is very poor. I made very tasty dinner tonight which she ate just to please me. She says that her head is a bit fuzzy which I've been telling her for years. On the positive side, she's used less pain pills today and the nose pain's a little easier. I may have to start looking for a younger woman after all.

[annekat]

I take mine on Tuesdays, too, so will think of her when I do. The fact that her nose pain is better is great! It won't happen overnight, but it sounds like the meds are starting to work, especially the pred, which she has been on longer. The fuzzy head and weakness with MTX is normal until your body gets used to the drug. Everyone is different. It is still early in the game. Try splitting the dose next time and taking some of it before bed, the rest the next day, and see if that helps any with the nausea.

[Barbara N]

I am pretty new to this forum and in a way similar to you but I have no nose and half one side of my head is gone.I pull my hair over from the other side to try and cover it up. I also had another rare disease before, Rhodatarula, you get it in the hospital and is a fungus in the blood that attacks your kidneys and heart. I have had all of this story for over twelve years but no one knows which one came first and what does what. I have learned so much on this forum and met the best people. You sound like a very positive person and that is great, also your family being so positive helps loads. My family are fantastic through all of this and now I have these new friends from this forum. Welcome to the group from me and I'm sure from all the rest. I still have so many more people to meet on here. Ánimo, barbara

[Frodo]

Hello Barbara, and thank you for your welcome.

One of the reasons I try to never feel sorry for myself, is because I'm sure that there are others out there, such as yourself, who are dealing with much worse than I am.

Congratulations for maintaining a positive outlook. You are correct that having a supportive family is a crucial part of living a happy life. Animals are also a great source of joy to me too. We have a wonderful labrador retriever that makes me happy everyday. I don't know why, but we named him, Frodo.

Take care.

[annekat]

Frodo and Barbara, you are both such fine examples to be inspired by, and it is great to have you both on the forum. Many of us on here share your love for animals, they are such a source of pure love, loyalty, and comfort. We have enjoyed hearing about Barbara's love for riding her horses and what that means to her.

[Barbara N]

Thanks Anne, that means a lot.